Approaches to Collect Comprehensive Electronic Patient Data Across Multiple Providers and Payers for Research:...

Area of Science:

• Health Informatics
• Biomedical Research
• Data Science

Background:

• Digitized medical data and interoperability enable comprehensive, longitudinal patient data use in research.
• Collecting data across multiple providers and payers presents challenges for accuracy and bias.
• US policy supports health information exchange but lacks focus on research data collection.

Purpose of the Study:

• Identify and evaluate existing and emerging electronic approaches for collecting provider and payer data for US research.
• Inform researchers about available data aggregation methods.
• Generate evidence to guide policy initiatives for research data collection.

Main Methods:

• Conducted a landscape analysis via interviews with 20 subject matter experts (SMEs) in the US.
• Identified 8 distinct electronic data collection approaches.
• Evaluated approaches using 12 criteria, considering participant, research team, and stakeholder perspectives.

Main Results:

• Eight approaches identified: participant-mediated (apps, data export) and data exchange services (regional/national queries, aggregated sources).
• Participant-mediated methods bypass governance but face participant burden and data gaps (especially payer data).
• Regional exchanges and aggregated sources offer governance solutions but have location/coverage limits; national networks lack research query capabilities.

Conclusions:

• Collecting comprehensive health data from multiple US providers/payers is complex and evolving.
• No single approach is best; suitability depends on study needs.
• Further exploration, benchmark comparisons, and policy efforts are crucial for progress.